Years ago, when I was a staff reporter for Alaska Highway News, I wrote a story that always stuck with me. It was a story about a young boy with a disease that was slowly killing his hip joint and causing him debilitating pain, and about his family’s journey to find the help he so desperately needed. That journey took them to the Shriners Hospital in Portland. I helped to tell the story, but I didn’t get it.
How could I? I wasn’t a parent. I had no frustrations with our healthcare system. I didn’t know what it was like to want to help your child but not be able to. As much as that story really stuck out in my memory from my time at the paper, I’m ashamed to say that when the fun guys with the fez’ and the little go-carts passed us in the parade that year, I still had no idea what they did.
Those guys wearing the rockin’ red fez? They’re Shriners. And they are an amazing group of men who are helping families in big ways every day in our community. I wish I had paid more attention then so I could have found them sooner, so I really hope you all are paying attention so you know they’re there if you ever need them.
You see, they have this huge network of pediatric hospitals that specialize in orthopaedics, spinal cord injuries, cleft lip and palate, and burn care. They take patients in no matter their ability to pay; their only goal is to provide these kids with the care they deserve to live a happy and normal life.
Furthermore, these hospitals are second to none. They have some of the best medical professionals and researchers in the world. Just listening to other families we have travelled with talk about how the prosthetics provided by the hospital are one hundred times more comfortable and natural for their child than what they could have gotten locally, you know that this hospital gets it. These hospitals are the best because they genuinely want these kids to live their best lives.
I’ve spoken in this column about my son’s rather difficult pregnancy and birth, and the experiences that came with having a preemie. But I’ve never really spoken about the fact that he was born with an orthopaedic condition that left us feeling completely lost as parents.
When he was first born, it was quickly evident that something was up with his foot. Our doctor in the NICU told us that he was club-footed on one foot. We were referred to a specialist and told it was easily corrected at that age, and off we went. It quickly became apparent that it wasn’t going to be THAT easy.
As parents, you see your child daily. And you get to know them pretty well. By the time we were seeing this specialist, we had questions. Lots of questions. And we weren’t convinced the diagnosis was correct.
I have a memory of my first meeting with this specialist. He literally didn’t even look at my son’s leg and foot for three seconds. I remember this because I even asked him if he wanted to look again (to which he said no). He just said “clubfoot” and slapped a cast on him. There was no opportunity to ask questions, get clarity or find out about what happens next.
Three castings later, it was overcorrected. Two weeks later, it fully reverted and went back in to a cast. A couple weeks more, he had us in to fit my son for rigid shoes and a special brace that was essentially a giant skateboard. The real kicker? They didn’t even make these shoes for children this young. At this point, we said we were done and begged for a referral to a pediatric orthopaedic specialist in a bigger centre. By this time, we realized that our biggest problem wasn’t his foot. Rather, his leg wasn’t growing properly.
The doctor we saw next was more concerned about his head then his legs and ended our appointment by telling us we’d either start leg lengthening surgeries a few years down the road or we’d damage his growth plates when he was getting close to maturity to hope the smaller leg would catch up. I left that appointment with no answers, but a lot of fear.
We saw other doctors and got a hundred different answers and concerns, but no ways to actually help our son so he wouldn’t limp or have hip and back problems caused by a difference in leg length.
Then, my brother told us to call the Shriners.
Everything simply fell in to place. They booked us an appointment in Portland for three weeks later (the shortest wait we’d ever had to see a specialist). They booked us plane tickets and a hotel. They called and got all his medical records. All we had to do was show up.
The hospital? Beautiful. The staff? Amazing. The nurses and assistants? So great with kids and so compassionate. The doctor? The most knowledgeable person we’d spoken to, and she gave everything to us straight. We walked out of that hospital feeling so relieved, knowing everything was going to be okay.
We now go every year so they can monitor our son and provide him with whatever he needs, be it a brace, lifts for his shoes… anything. We know he still might face surgery, but the Shriners Hospital performs much less invasive surgery on children like our son than what he would have faced at a more local hospital.
So what do Shriners do? For families like ours, they give us everything we need. Medical care, travel assistance, and the most important thing of all: peace.
So if you don’t know about this amazing organization, I urge you to check out their site or chat them up when you see one of those fezzes out in the community. They’re an organization worth having on your radar, and a group of really great guys.
All I can say is… Thank you.
Brianne Zwambag is a full-time boo-boo healer, snack artist, janitor, referee, master storyteller and child stylist in Fort St. John, B.C. who sometimes gets a chance to sit down and write about life, mommyhood and the issues that surround it.